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Hold Your Own Lupus Awareness Month

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

As you might know by now, May is Lupus Awareness Month and May 10th was World Lupus Day. Halfway into May, there is still so much you can do to raise awareness about lupus. Awareness comes in many shapes and sizes, from local and national advocacy at government offices to utilizing social media in order to start a conversation about lupus. It’s important just for people to hear or see the word lupus, repeatedly, so that they at least become familiar with it; otherwise, it’s invisible and nonexistent to them, right?

Let’s also remember that Lupus Awareness Month is a time to educate people about lupus and advocate for yourself among friends, family, workplace and your larger community. Maybe you need more time with your doctor who usually rushes in and out of your appointment and you make an effort to diplomatically point out that a few extra minutes of discussion means a lot to you. Perhaps you have been nervous about telling your employer you need workplace accommodations but you now realize your needs are too important to keep pushing aside. Maybe you take the plunge to invite a friend or a family member to a support group so they could gain a better understanding of what you go through with lupus.  This month would be a great time to evaluate your needs and identify which ones you have been putting aside; but this time, you act on them.

There are very simple things we can all do to raise awareness in our communities, especially if you don’t have much time or you are experiencing fatigue. The S.L.E. Lupus Foundation’s Los Angeles division, Lupus LA,  has put together a wonderful presentation explaining advocacy with great suggestions on how to raise awareness for lupus. Some of my favorites include:

  • Drop off information about lupus in public places in your area (call the S.L.E. Lupus Foundation, and we can provide you with free brochures)
  • Activate your avatar: Change your profile icon to a lupus awareness image to alert Facebook, Twitter, MSN, Google Talk, Yahoo, and AIM friends about the fight for Life Without Lupus. (To download: right-click image, choose “Save Picture as…”)
  • Talk to your place of worship about having a service that delivers a message on lupus
  • Use your Facebook or Twitter status or YouTube account to tell your lupus story. How does lupus impact your everyday life, your family members, or friends? (Sample Facebook and Twitter statuses provided in document)
  • Call your local lupus organization and find out what activities they have for Lupus Awareness Month and beyond.

Visit our website for other simple suggestions, print brochures, catch up on our past webinars to learn more about lupus and share the information on your social media pages.

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Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.